Wish Reveal

Recently I read this on a fellow adoptive parent’s FB page…

“Just because a family that has adopted says that it can be downright hard, does not mean that with all of their might they wouldn’t do it again and again. Admitting the hardship is not an admission of regret, it is evidence of the resolve.................” (Katie Baron).

Life after adopting Kai has been hard. We have been faced with dealing with more extensive medical issues than we expected. The past 18 months has been a whirlwind of doctors and surgeries. The 80,000 miles we’ve put on our vehicles in the past 18 months proves just that. And then there’s information. Lots and lots of information to process.  I know more about the cardiac, pulmonary, neurological, GI, endocrine, and genetic systems than I ever anticipated. The human body is extraordinarily complex! Of course, the medical intricacies are only compounded by his past trauma of being an orphan. I can’t recount how many hours Chris and I have tried to calm Kai, inconsolable, crying “I’m afraid you’re gonna leave me”.

It’s been very hard.

But, it has also been perfect.

His boisterous personality has added so much vivacity to our family. This, in turn, has given us an incomprehensible about of joy. Admittedly, his silly personality makes us cringe sometimes, but he makes us continually laugh. We are in awe of the skills he acquired since coming home. We admire how relatively well he adapts to the challenges he faces. His upbeat outlook on life is commendable. I think we’d be fooling ourselves if we said that we had the ability to articulate in words how much he has changed us for the better. It’s simply not possible.

One thing we do know for sure is that, amidst this journey, we have met many extraordinary people/groups who have come alongside our family to support us. One is Make-A-Wish Michigan. Kai was referred as a Wish kiddo just over a year ago---and the rest is history. This organization, especially our MAW volunteers, Trista and Sue, has been a provision throughout this last year…beyond Kai’s actual wish.

The stuffed bear that Kai received after open heart surgery, appropriately named Make-A-Wish Bear, is his “go to” comfort after a seizure. 

He affectionately refers to Hamilton High School as Make-A-Wish School after the Magical Wishes 5K was held there last summer.

During Kai’s last hospitalization, we had a surprise visit from his volunteer to drop off a gift, a much needed “pick-me-up”. Of course, this is all in additional to meals, flowers, cards, visits—too much to even mention. MAW has not only provided a “good” for Kai to look forward to, but it has worked relentlessly to meet the needs of our entire family. I’m sure our volunteers are the “best of the best”, but they have definitely been God’s hands and feet to us.

Likewise, so have the construction crews that worked with us through Make-A-Wish.  Mike, from Out on a Limb Playhouses, has been a gem to work with. Without doubt, Kai knew that Mike would do anything to make his wish perfect. And he did. In fact, he went above and beyond…from finding the perfect blue slide to painting the interior “just right” to adding a special metal sign to the front of the barn. Not only that, but during Kai’s last hospitalization, Mike called, checking in on how Kai was doing. Knowing that Kai was not well, he, along with his crew, decided to FaceTime our family. This gave Kai the opportunity to get a glimpse of the building progress…along with the reveal of the anticipated blue slide!

Through Kai’s wish, we have also connected with Dan Vos, of Dan Vos Construction. The initial connection started with discovering that the company had donated all of the materials for Kai’s barn playhouse. However, we have also bonded with them through the fact that his family also has 2 children adopted from China, one of which has a congenital heart defect. We look forward to having the opportunity to have their family come and enjoy Kai’s new playhouse.

Thursday was Kai’s Wish Day when he received his barn playhouse. Make-A-Wish has given Kai a fantastic playhouse that he enjoys immensely, but it has also given us friends for life. It has strengthened the friendships we already had—we were blessed to have 70 supportive friends at our home Thursday night to celebrate Kai’s Wish Day. This has given our family hope and strength to face upcoming medical procedures. As John, VP of Dan Vos Construction, told us Thursday at our reveal party, Kai’s adoption, medical story, and wish are a “God thing”. That definitely helps give us the resolve to do whatever Kai needs.

Click to watch Kai's wish reveal video:

Wish Reveal

Epilepsy

While we wish our Spring Break was filled with sun and sand, we, instead, got to make a trip--once again--to Ann Arbor. 

Sure, it’s not exactly a vacation hotspot, but it was a very informative trip.

This will be a very short post, as we’re continuing to process Kai’s epilepsy diagnosis…a new diagnosis to add to an ever-expanding list of medical issues. True, our “normal” has grown to include cardiac, pulmonary, GI, endocrine, and renal complications, but watching him have seizures has been incredibly demanding. This normal needs to sink in yet.

However, to pass along an update, we learned today that the specific type of seizure that Kai is having is called a complex partial seizure. Specifically, his are originating in the left temporal lobe. Originally, it was suspected that he was having simple partial seizures. Both types are focal seizures, meaning they occur in one region of the brain. Complex partial, however, start in one small area of the temporal lobe, but quickly involve other areas of the brain.

Here are just some quick facts about Kai’s complex partial seizures:

*all seizures are caused by abnormal electrical disturbances in the brain.

*He typically has an aura before having a seizure. This is sort of a “warning” before the actual seizure.

*He has had abnormal muscle contractions and eye movement. He also has automatisms, or automatic movements.

*Kai has also had some abnormal sensations/tingling.

*Along with this, there is impaired responsiveness.

*Unfortunately, the seizures have affected his heart rate. This, of course, puts added stress on his already complicated heart.

*The seizures are typically lasing between 1-2 minutes.

*He has a clear postictal state. He is generally confused and agitated immediately following the seizure. He has fatigue and exhaustion that lasts for hours.

As we continue to work with geneticists to determine if there is an underlying syndrome caused by a chromosome deletion or addition, Kai will soon be having an MRI to determine if his seizures are related to a congenital brain defect. There is no indication that there is a tumor, but rather a defect that he was born with. This will give us more information about how his funky little body is functioning.

As we wait for his MRI and genetic test results to come back, we’ll keep working to control and manage Kai’s seizures with meds (an adjustment is probably coming next week)…and working on understanding our newest normal!